CA 125 very high

[Ashmeg]

Last week I ended up in the hospital with severe pain in my stomach. I was told I have a complex ovarian cyst that was 5". They did a CA 125 test that show my levels at 3040. I now need to see a gynecologist and am terrified. Please if any one knows tell me what I should expect at this appointment. Thank you so much.

[Kerrid17]

A complex cyst doesn’t mean cancer but I would recommend a GYN oncologist to do the surgery just in case, I would imagine your GYN would also recommend it. Having a cyst can certainly elevate your CA-125 level, especially if there’s inflammation. I can’t tell you not to worry or read everything on the internet, I would research complex cysts and not ovarian cancer. So sorry you have this worry on you and hoping and praying for you to get through this smoothly!

[MelMB]

My mother had a very similar story. Her cyst, now tumor was 13cm. Although her numbers were very low. She had surgery to remove the tumor. Because of her age, they ended up doing a full hysterectomy at the time due to the placement of the tumor. Sending you well wishes Asmeg!

[Ashmeg]

Thank you very much. I went to the gynecologist yesterday and left me even more confused. I am waiting to hear if I'm going to see the gynecoligicaoncologist here in Thunder Bay, Ontario. We don't have one, but one comes in from Hamilton, Ontario every month. He or She will be in on the 20th of September. Or If they choose I will have to fly to Hamilton. He said it will have to be removed, but he also said that because I am not in menopause, he takes away a point, but because my levels are at 3040 he gave me 4 points, which then multiplies my ca 125 by 4. So my levels are over 12,000 which he said I am very high risk. Now I'm even more confused and scared. I thought 3040 was huge. So now I wait and hope to hear from the dr asap.

[GwenHP in reply to Ashmeg]

One of the hardest things is all the waiting.

You mentioned points and taking away or adding them to determine risk. I’m not familiar with that. However I will say a CA125 of 3040 is high. Having said that I will also say that mine was also high when I was diagnosed and I’m still here 13 years later. We will be with you as you go through this.

[Lobster2]

You asked what you should expect. The unknown is scary and if you do any research on the web, then you are toast! But, many advances have been made with Ovarian cancer and it is not the death sentence it used to be years ago. Your numbers are very high. Your #1 goal should be to act fast and get your doctors to move fast too. Get to an oncology GYN as soon as possible. Have you had a CT with contrast done yet? Is that how they know the size of your cyst? That would be the first step, having a CT scan done with contrast. I was diagnosed in Nov. 2015 and was in surgery to have a full hysterectomy and remove all the cancer 1 day less than 2 weeks from my CT scan. I'm so thankful I had a proactive GYN and oncology GYN. If you have any questions please feel free to reach out to me. I went through 18 weeks of chemo in 2016 after my surgery. I was cancer free for 2 years and then in Feb. 2018 I had a few questionable areas. I had another 5 rounds of chemo this year and now I'm on an oral chemo called Zejula (it's very new). My CA125 hovers in the teens now - anything below 30 is considered normal. Keep up posted on what you learn.

[SharonCol in reply to Lobster2]

Hi, I am putting a new question out there to anyone who has any experience with the following . I have high grade stage 3C Fallopian Tube cancer. I had full debulking surgery in November of 2016, followed by over 4 months of chemo. I was off chemo for about 9 months but the cancer returned in several places from my lungs to my pelvis. I returned for 6 more chemo treatments, once a month, and just finished. My recent CT scan was good. I have been told that my cancer is incurable and that it will return again faster than it previously did. I asked for a maintenance drug or maintenance chemo and was told that there is no maintenance treatment available to me because the cancer I have is not genetic and the only treatment option is for those women who have genetic cancer. They only want to check my CA 125 every 4 months. My CA125 levels were never high and with this last round of chemo, the numbers did not come down. I am nervous that by the time the cancer re occurrence is detected, it might be too late. Zejula was mentioned. Is this a new maintenance drug available in Canada? Could you please tell me if Zejula was recommended for non genetic cancer. Any other ideas on early detection of re occurrence would be greatly appreciated. Thanks so much, Best wishes to all of you.

[Lobster2 in reply to SharonCol]

I'm on Zejula but I think it is for genetic based abdominal cancers. I'm BRCA2 positive. If they day no meds then go holistic with extreme diet. Look at Keto or Gershin method. Also Google Chris Beat Cancer. He's all into the diet.

[Quyana in reply to SharonCol]

I am not BRACA positive and was placed on Zejula after my second recurrence. I have no genetic reason for having ovarian cancer.

[Ashmeg]

Thank you all very much. I see two drs at the Cancer Centre here in Thunder Bay on the 20th, to which they will let me know the next steps. My family Dr said it would probably be an mri and biopsy. So, we go from there. Crossing my fingers that all is well and I'm worrying for nothing.

[Cynthia18]

Hi ashmeg,I'm sorry to hear of your condition. I'm glad you found this site.i was diagnosed with 3c right before Christmas2016.i know your fear and anxiety.my Dr comes once a month to my area also.there are not a lot of ob/gyn in certain areas so the team of drs travel to see them.

You don't have a death sentence but you do have a battle ahead of you.

Try to get your body strong for your battle!

Please be strong and don't give up hope!

[Lobster2]

Tip for taking contrast stuff you drink for CT scan. They will most likely do a CT with contrast over MRI. Take a 12 oz bottle of cranberry juice or cran-cherry juice with you to lab. Ask them to mix your contrast with your juice. It's much easier to get down with the sharp taste of the cranberry than the stuff they give you.

[Ashmeg]

Thank you everyone. After meeting with the gynecoligicaoncologist, she said she would like to do blood tests and a transvaginal ultrasound. Blood work has been done, waiting on results. Haven't had the tvu yet. I meet with her again, next month (October) near the end of the month. I'm kind of surprised that a biopsy isn't being done at this point. But who am I to argue. So again I wait and hope it isn't cancer. I will keep everyone posted. Thank you all for your replies, guidance and compassion.

[Lobster2]

U r in control. Argue and ask questions. Let them know u have researched and what u want done. Push for CT with contrast not ultrasound because if Ultrasound shows something next will b CT scan. Waiting another month for this is not good. Push back this is urgent business.